We need a new policy called the “NDIS” on Disability Inclusion

Written by Jonathan Shar, PDA Director

While the National Disability Insurance Scheme takes account of our care and support requirements, in my view the policy doesn’t go far enough to tackle the marginalisation and discrimination that people with disabilities face.

If cases like *Quaden Bayles has taught us nothing, Australia has a problem with our attitudes and perceptions of people with disabilities. In my life, I walk with an unusual and stare provoking gait. I have a speech impairment. Despite that I run my own business and sit on a board but the general public don’t see that side of me.

I share this not for your pity or condolences but for context. Like you I’ve faced adversity in my life. For me I can’t hide my disability, instead I celebrate my distinctive abilities. It is not the fact that I can’t run that is my disability but the taxi driver that refuses my fare because I am “unaccompanied”

There has been calls to integrate disability awareness into the school curriculum but we need to go much further because I don’t want to be trapped in a dichotomy between a welfare recipient and Paralympic champion, I want the tools to live an ordinary life without the social judgement of people who has no idea about disabilities.

For me, a ramp is a small part of what it means to be an accessible society. An accessible society would be one where I could say “This is me, disability is my identity”, it would be a society where children would be educated to ask first, stare never.

For this we need a shift in policy, we need to treat disability discrimination as something to be prevented by education not having to be referred to a complaint authority. Disability awareness in my view should be a component of study in high school PDHPE courses. Making disabilities part of normal life should be instilled from people from a young age.

On top of this we need campaigns focusing on everyday people with disabilities not just those with a public profile or cute kids who can illicit the most donations, a campaign not of inspiration porn but people that we can aspire to. We need more people like Nas Campanella being the public face which makes disability normal.

A good attitude may not erase a disability but it can make disability more included in our society.

* https://mobile.abc.net.au/news/2020-02-24/quaden-bayles-not-alone-disability-royal-commission-finds/11994872?pfmredir=sm

International Wheelchair Day

Written by Talia Spooner-Stewart, PDA Director

On this International Wheelchair Day, it provides us all an opportunity to celebrate the positive impact wheelchairs have on our lives.  A day not only for wheelchair users but also a day to recognise the millions who either provide accessibility to wheelchairs and for those who support and or care for wheelchair users themselves.

Did you know that only between 5-15% of people whose mobility depends on the use of wheelchairs has access to a suitable wheelchair? Not every wheelchair is the same and those with mobility limitations all have different reasons for their requirements. I never really gathered the impact of what that means until my new custom fit wheelchair was delivered.

I have been diagnosed with Multiple Sclerosis for over 20 years now, the progression of this disease has become more apparent over the last 10 years with my mobility the biggest affected. Once, I could mobilise with a walking stick and crutches and now, whenever I venture out of the house I use my wheelchair. As my mobility worsened my required specifications for my wheelchair increased.  From using an old stationary transfer wheel chair, to independently moving around in a manual wheelchair to now having a custom wheelchair to fit me with a smart drive attached for ease has been an incredible improvement to my life. It has provided so many opportunities I previously would not have had.

Previously I would have been limited or even excluded all together from activities either due to restricted or no accessibility at all.  Being able to use my wheelchair and the opportunity to use other specialised wheelchairs has provided me many opportunities that previously were not available. It has influenced my independence, choice, a sense of community and an increase in my self-confidence. These opportunities and choices have allowed me to undertake and enjoy tasks that previously I would have NEVER have done or seen. Provided an opportunity to do some amazing and life changing things.

These are photos of some amazing things that I have been able to do due to the access to suitable and specialised wheelchairs. From swimming in the ocean on a beach wheelchair, to getting up close and personal in Uluru with an off road wheelchair to volunteering at the Invictus games. None of these things unique experiences would be possible without a wheelchair, the people who support  me in a wheelchair or the accessibility implemented for wheelchairs.

Happy International Wheelchair Day.

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The One-Legged Sax Player’s view on Perception

Written by Andrew Fairbairn, PDA Director

Let’s talk about PERCEPTION.

I Work for an organization called Limbs 4 Life as a Project Coordinator.
One afternoon I was driving home from a meeting about 15 kms from my house. Most of that journey there are roadworks being done. It is normally an 80 km/h speed limit, but because of the roadworks, it was down to 40 km/h.


As I was cruising along at 40km/h, I happened to glance over and noticed new looking white Toyota Prado with a roof basket and side awning, you know, your usual 4wd set up, parked on the side of the road with another car in front. Not unusual you may say, and you would be correct, BUT, as I got closer, I noticed that said Prado, had some other, hidden additions. It had blue and red lights flashing in the front grille and also in the rear windows. It was an unmarked WA Police car. Now my perception of the vehicle had totally changed.


What you perceive is very much guided by how you think and can be defined by your recognition and interpretation of a sensory input. For an example, if at a set of traffic lights, you have a green light, you perceive, through your sense of sight, that it is ok for you to proceed.


What does it mean for those of us with physical disabilities? We may need to have additions made to the “normal” for us to be able to process that sensory input. Things like flashing lights, sounds, alarms etc. will assist hard of hearing and vision impaired people. For people with mobility issues, obvious things such as ramps and rails assist when we are navigating the community.


BUT………perception goes both ways. What able body people perceive good for us, doesn’t necessarily equate to what works for us. We, as a community of physically disabled people, need to be in the forefront of planners and designers’ thoughts and minds when they are building anything in the community. You can do this by getting involved in your Local Government Area Disability Action and Inclusion Group. You can have input through State and Federal Government Planning Groups, such as those that are put together when they build new sports stadiums, shopping centers and recreational facilities.


The more you go out in your community and exercise your right of place to that community, people’s perceptions will change, and they will see you as valued and important.


Lastly, don’t let other people’s perception of you, or our community, be the thing that stifles you. You are unique, and you bring to the table a wealth of perception and experience that only you can have.

Are you a PDA Member yet?

Membership is FREE and lends PDA your voice to work towards making real change to the physically disabled community.

We have some exciting things going on behind the scenes that we will reveal very soon, but in order to make the greatest impact we need your help and want you to be part of our journey.

Click on the link (www.pda.org.au/membership/) and fill in your details.

Couldn’t be easier…

…and you will go in to the draw to win a $50 Coles gift cards.

If you’re already a member and want to go in a members’ draw for a $50 Coles gift card, follow the same link and update your details.

We have 14 $50 Coles gift cards to give away – one per state/territory for new members and one per state/territory for existing members who update their information.

This campaign will run until close of business AEST on Friday 7th February 2020, with winners drawn at random as per the groups outlined above.

Winners will be contacted by PDA on Monday 10th February 2020 and announced on our Facebook and Instagram pages.

Sign up and together let’s make our voices louder.

Healthcare needs to be truly inclusive

written by PDA’s Ambassador, Dr Dinesh Palipana OAM

“Health professions have ironically been resistant to include the very people that they treat. We are now starting to make headway in medicine. Other professions must come into line too. What better way to change healthcare for better than to include lived experiences?” Dr Dinesh Palipana OAM

As a doctor with a spinal cord injury, I’ve had the opportunity to gain a unique insight into healthcare delivery for people with disabilities. Physical access is often an issue, even in big hospitals.1 Flexibility is necessary, considering the unpredictable impact on time because of a different lifestyle. However, my most striking experiences have been in the diagnosis of sometimes life-threatening conditions.

With a spinal cord injury for example, patients mightn’t give a classical story for common conditions because of differences in sensation.2 For the same reason, physical examinations may not turn up anything useful for the doctor.3

I once woke up with chest pain, breathlessness, sweating and palpitations. It didn’t get better. Over time, this was reviewed by a few different doctors but was eventually put down to anxiety. I became frustrated and listened with my own stethoscope. I could hear some sounds in the lungs suggestive of a few different problems, but no one heard me out. Eventually, I started losing consciousness every day. Then, someone took notice. We eventually found a significant amount of fluid around one lung. The issue took weeks to identify. I ended up in an intensive care unit.

Another time, I was a patient in an overseas emergency department that wasn’t aware of autonomic dysreflexia – a potentially fatal complication of a spinal cord injury. I knew what was happening then, but no one listened. I thought that the end was near that day. Fortunately, we knew a doctor who turned up and handled the situation in the eleventh hour. In contrast, I’ve been under the care of an open-minded local emergency department who listened and identified the problem quickly.

This state of affairs is no one’s fault. In medical school, doctors are required to learn about a thousand and one different things. While specialty training as a doctor, the focus becomes even more narrow. There is just no time to cover the long-term intricacies of conditions like a spinal cord injury.

General practitioners are the frontline in Australian health care. They are the first that can see the hint of a problem. A proactive approach prevents problems at the gates, but this requires an understanding of what to look for in this unique population. Even in the early 1900s, people with spinal cord injuries for example lived very short lives because of complications. It was often a death sentence. In some parts of the world, this is still the case. But, we have the resources to ensure that our population can live a healthy and productive life comparable to those without similar injuries. Today, medicine can do that.

I must note too that we often see people in the hospital with questionable treatment given to them by their daily caregivers. Caregivers are an invaluable part of society but as with everything, some reckless ones still pervade what is perhaps one of the most precious relationships. More than once, I have seen needless injuries and negligent care. I even had a personal interaction with a caregiver who laughed about dropping their helpless client.

I’m fortunate to be in a position to have some understanding of the life experience in someone with a disability who presents for healthcare. I remember one night when a patient said, “I’m so glad that you came into this room as my doctor, because I knew that you’d understand”. I’ve also been lucky enough to have the background to adequately direct my own health care. I wonder though, what about the thousands that are voiceless?

It’s never productive to just talk about problems. What are the solutions? I can think of two immediate things.

One, is education. I’ve been involved with developing education initiatives on spinal cord injury for general practitioners. The goal is to have some upskilled general practitioners in this area that people can access for care. It’s that simple. Upskilling general practitioners to have a special interest in various disabilities is important. Thoughtful care in the community can reduce hospitalisation and resource use; and save lives.4 However, it will be up to us – the community – to drive these initiatives. No one else has a vested interest to do so.

Two, is having more people with disabilities in the health professions. I faced more than one challenge in becoming a doctor with a spinal cord injury. I once talked to a student in a wheelchair who wanted to study speech pathology, but was told that they couldn’t. These stories are not isolated. The health professions have ironically been resistant to include the very people that they treat. We are now starting to make headway in medicine. Other professions must come into line too. What better way to change healthcare for better than to include lived experiences?

Australia is leading the way in social changes for an inclusive society. We have an opportunity to create an inclusive healthcare system as well.5 We’ve seen the horrors of areas like aged care exposed in Royal Commissions. We don’t need to wait for the same in disability and healthcare. With a grassroots effort from us all, we can make it happen.

References:

1. Guilcher S, Munce S, Couris C, Fung K, Craven B, Verrier M et al. Health care utilization in non-traumatic and traumatic spinal cord injury: a population-based study. Spinal Cord. 2009;48(1):45-50.

2. Strauther G, Longo W, Virgo K, Johnson F. Appendicitis in patients with previous spinal cord injury. The American Journal of Surgery. 1999;178(5):403-405.

3. Ingram R, Suman R, Freeman P. Lower limb fractures in the chronic spinal cord injured patient. Spinal Cord. 1989;27(2):133-139.

4. Guilcher S, Craven B, Calzavara A, McColl M, Jaglal S. Is the emergency department an appropriate substitute for primary care for persons with traumatic spinal cord injury?. Spinal Cord. 2012;51(3):202-208.

5. Donnelly C, McColl M, Charlifue S, Glass C, O’Brien P, Savic G et al. Utilization, access and satisfaction with primary care among people with spinal cord injuries: a comparison of three countries. Spinal Cord. 2006;45(1):25-36.

PDA ANNOUNCES ITS INAUGURAL AMBASSADOR

It is with absolute pleasure that we announce Dr Dinesh Palipana OAM as PDA’s inaugural Ambassador.

An Australian doctor, legal professional and disability advocate who was the first quadriplegic medical intern in Queensland, the second Australian with quadriplegia to graduate as a doctor and the first with a spinal cord injury, Palipana is a welcome addition to our organisation.

Awarded Australia Day honours last year (2019) earning a medal (OAM) for his service to medicine, Dinesh is known for his determination and services to medicine, research, advocacy and perseverance in the face of adversity. Through his own personal challenges and challenging the negative public perception associated with physical disability (particularly in the medical fraternity), Dinesh is the perfect role model for PDA’s growing membership.

Always keen to take on a new challenge, Dr Palipana is excited to be championing PDA’s values, activities and mission of empowerment. “I am honoured and so excited to be supporting this wonderful organisation. I love the work that PDA does. Hopefully I can help inspire others to take on big challenges and reach their full potential, regardless of their disability.”

PDA is incredibly excited to have Dr Palipana on board, promoting the physical disability needs agenda and representing the PDA community. Liz Reid, PDA’s President, said “We are absolutely thrilled to have such an incredible advocate for thinking beyond physical disability. Dinesh embodies everything we stand for at PDA and we look forward to working with him to show that, with determination and support, those living with physical disability can achieve amazing things.”

Welcome to PDA’s family Dinesh. We are honoured and excited to have you on board and look forward to an exciting future in raising awareness and support for Australians living with physical disability.

The Disability Royal Commission: What’s Happening in 2020?

A Schedule of 2020 Events has been released by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Alongside this a Progress Report sets out the findings and actions undertaken since the Commission’s establishment in April 2019.

Hearing dates scheduled for the first half of 2020 can be seen below.

Key investigations will focus on cognitive disability access in the health system, the experience of students with disability in the education sector, and the experiences of people with disability in the justice system.

The Royal Commission will also investigate findings into the experiences of First Nations people with disability in terms of violence, abuse, neglect and exploitation.

Community engagement opportunities throughout the year will enable those with disability an opportunity to share their personal experiences and concerns in less formal environments that will be included and shared in the Royal Commission.

To date the Royal Commission has uncovered many disturbing accounts of violence, abuse, neglect and exploitation of people with disability.

Chair Ronald Sackville AO QC encourages involvement from the public in the Royal Commission’s investigations and findings. “With the active participation of people with disability, advocates, and the disability community, the Royal Commission provides a genuine opportunity to bring about the transformational change necessary to achieve a more inclusive society.

“Such a society must unstintingly recognise the dignity, autonomy, equality and freedom of choice of people with disability.

In line with this, the Royal Commission will shortly launch a new website which will enable those wishing to be heard to submit their responses and concerns online through a simplified and easy to fill submission form. This website will also make available downloadable resources and online ordering system for free print materials.

Physical Disability Australia remains hopeful that the Royal Commission will positively impact on the lives of all those living with disability in our country.  To keep up to date with key issues we encourage you follow us on social media or to sign up for our free membership.

Together we can make a difference!

  • – February 6: Engagement with First Nations people, organisations and communities – Brisbane
  • – February 11 – 14: Engagement with First Nations people, organisations and communities – Northern Territory
  • – February 17 – 28: Public hearing – Health, Sydney
  • – March 4 – 5: Engagement with First Nations people, organisations and communities – Queensland
  • – March 17 – 19: Community engagement activities – Launceston & Burnie, Tasmania
  • – March 24 – 27: Public hearing – Education, Brisbane
  • – April 1 – 3: Community engagement activities – regional Victoria
  • – April 21 – 22: Community engagement activities – Western Sydney
  • – April 27 – 1 May: Public hearing – Justice, Brisbane
  • – May 6 – 7: Community engagement activities – Brisbane
  • – May 13 – 15: Engagement with First Nations people, organisations and communities – Northern Territory
  • – May 18 – 22: Public hearing – Issues faced by and experiences of First Nations people with disability, Northern Territory
  • – May 25 – 26: Engagement with First Nations people, organisations and communities – Northern Territory
  • – June 10 – 12: Public hearing – Topic to be advised, Tasmania
  • – June 16 – 18: Community engagement activities – Far North Queensland

To find out more details about these events, you can check the Disability Royal Commission website, send an email to DRCenquiries@royalcommission.gov.au, or call their information service on 1800 517 199

PDA President Liz Reid’s speech at International Day of People with Disability Event at Parliament House in Darwin

Thank you Minister Fyles, Minister for Disabilities and good evening everyone,

I would like to acknowledge that this function is being held on the land of the Larrakia People, and pay my respect to elders’ past, present and emerging.

I would like to acknowledge people with a disability and their families on International Day of People with a Disability.

The United Nations sanctioned the 3rd of December as a global day of observance 27 years ago – I like some of you in the room may even remember the first celebration and been part of the reforms and milestones ever since.

The day seeks to increase awareness and inclusion of people with disability in every aspect of political, social, economic and cultural life.
This year’s theme, The future is accessible, this resonates for me personally and professionally.

My name is Liz Reid and I’m the Executive Officer for YouthWorX NT. For those who don’t know me I was born with a rare physical disability and remade from the waist down.

My education journey started at a special school; my parents back then were social inclusion pioneers, I was mainstreamed into the school in my local suburb, with the kids in my street.

I was immersed into everything the average kid would do and disability was never part of the equation. It hasn’t always been easy and requires careful planning and lots of creativity.

It wasn’t until last year that I fully embraced my disability and I became a self-managed NDIS participant – this has been huge for my family and I as I hadn’t been disabled enough for any supports before, a cost that we as a family just did because it was necessary.

The investment in Australians with a disability by governments through the NDIS, is the biggest social reform that can’t be underestimated regarding personal value and social worth. Yes, there have been pain points but it’s getting so much better and more to do. Fun fact – the NDIS conversation has been going on since 1975.

I’m fortunate to be able to blend my work with my passion for the disability community. Privilege to represent Territorians with a disability on local networks like the Darwin City Access and Inclusion Advisory Committee, national Disability Representative Organisations and the NDIA Independent Advisory Council, so our voices are heard, and they matter.

Professionally I’ve spent most of my career in education, training and employment with the view that everyone has got the ability to succeed and follow their aspiration and dreams.

For some how they get there might be a little different. I’m a big believer that we need to raise the awareness of people of all abilities and celebrate achievements with the wider community to think and act inclusively, in all aspects of life.

This year YouthWorX NT celebrated 21 years of proudly supporting Territorians to be the best they can be through a range of diverse programs. We have been actively involved with the NDIS since 2011 watching it develop, grow and to find the sweet spot for our organisation to meaningfully contribute to the lives of young people with a disability.

YouthWorX NT was recently awarded a grant from the NDIA’s Information, Linkages and Capacity Building fund to deliver Career Launchpad service. This service provides specialised career coaching and vocational support for young people with disabilities in mainstream school to the world work. The aim is for young people is to enhance in their personal, social and practical employability skills with the ultimate goal of sustainable employment.

Its beautiful the effect this program has on the young people, one young man, who was disengaging and at risk of leaving year 11, now after being part of Career Launchpad and having ongoing coaching sessions, has reengaged and now with the goal of focusing on school, finishing year 12 and a career in the aviation industry.
Career Launchpad has provided an opportunity for young people with a disability to participate in workshops such as Launchpad, vision boards and resume writing alongside young people from our other programs, all while building confidence. Young people don’t see difference, disability is not part of the equation.

I wish to recognise our program partners, Department of Education’s Transition from School Team. APM, NDIA and the skills and talent of the YouthWorX NT team, that believes – Connecting Territorians with opportunities to realise their dreams, goals and potential is paramount to live an ordinary life.

I would like to make a special mention and thanks to the YouthWorX NT Leadership Academy for attending. These young people have made commitment to be the youth voice of our service to represent all young Territorians on matters of diversity, and inclusion.

Thanks to all who everyday promote the participation of persons with disabilities and their leadership in our community.